I’m an Immunocompromised Teen. And I am Angry.

I’m newly 18, I’m immunocompromised, and I am angry. I am angry at the government. I am angry with select family members. I am angry with friends. And, truthfully, I’m furious with the world.


Introduction

When the pandemic started, I was not immunocompromised. Back then, all I had in terms of disabilities were cerebral palsy, anxiety, and depression. (Read more about how I accepted those diagnoses in my piece on Disability Pride.) I knew the pandemic was bad, but I didn’t really think much of it. I followed the guidelines, wore my mask, and went about like everything else was normal.

All of that changed on December 18, 2020. A few short months earlier, I was diagnosed with spondyloarthritis with sacroiliitis, a specific type of inflammatory disease in which my body attacks my hip and sacroiliac joints because it misreads them as foreign. (Don’t quote me, this is just how it was explained to me.) And on that date, December 18, 2020, I began taking Humira injections. Humira is an anti-tumor necrosis factor (TNF) biologic. A biologic is a medication that is synthesized through living organisms and processes. This synthesis allows for proteins, which create the misread immune response, to be targeted (paraphrased from my amazing colleague Daniel O’Leary over on the Autoimmune Community Institute Blog). In my case, the biologic targeted the TNF that liked to be overproduced to “fight” my hip and back. Biologics suppress the immune system; they have to, so the body stops doing the bad thing (in my case, destroying my hips and back). More recently, I also began taking leflunomide, a disease-modifying anti-rheumatic drug (DMARD), which further suppresses my immune system, to give Humira a little “boost” to help it work better.

So, I’m immunosuppressed… in the middle of a raging pandemic, in a state where no one ever takes anything seriously or follows any guidelines. Fuck, what now?

I take every precaution I can, is what. I wear good masks (KN95 or greater). I stay home as much as possible. I test before going out. I stalked the Walgreens website the day Alabama opened up vaccine appointments for my risk category. I do everything I can, taking every precaution recommended, and doing my due diligence in committing to the American ideal of “personal responsibility” to keep myself safe. But you can’t personal responsibility your way out of a pandemic, a fundamentally systemic issue. And that is why I’m angry.


Government Grievances

The government response to COVID, under both federal administrations, has been a complete and utter clusterfuck—an abject policy failure.

Think back to all the times former President Trump suggested COVID was “just the flu” (like the time he literally said “this is a flu” in a press briefing), or that hydroxychloroquine was “good” because he was taking it. This is just the start of one of the worst failures of public health in the history of the United States. And that’s why I’m angry.

When Biden took office, I had high hopes the response would be better. And, it was for a bit. We had widespread test and vaccine access, mask-wearing, and actually decent public health advice for a hot minute. But then, the abled people decided they were done with COVID, and it all went to shit.

On May 13, 2021, the Centers for Disease Control and Prevention (CDC) under Biden made one of the most irresponsible decisions imaginable and removed most guidelines for vaccinated individuals. I’m still trying to find out the actual reason why they did it with my pending FOIA request, but some media outlets report that the change in guidelines was the result of public backlash. I can see that, even if the CDC would never admit it. As I sit here on a Thursday night writing this paragraph, I’m on a call with my partner, who watches me fume and “angry stim” as I review the linked resources and scroll through the Wayback Machine. I am angry. And I have every right to be.

I am angry at this change because it is blissfully ignorant of disabled and immunocompromised people. Here begins the “sunshine and rainbows if vaccinated” rhetoric—one which I will return to in a moment. I feel isolated when everyone is celebrating for no reason: there’s still a pandemic, you can still catch it, and you can still die, even when vaccinated, although the chances are less likely. The removal of common sense public health measures in the middle of a pandemic that requires them is no reason to celebrate.

I remained angry at the CDC and the White House for peddling this rhetoric (including at the White House hosted 4th of July event relying on the “honor system” for vaccination), backed up with the supposed “science” they were following. I didn’t say much at first. But then, on March 3, 2022, I snapped. This was the day the CDC announced “new” COVID Community Levels, a way to actually create and push the “sunshine and rainbows” data, because it only takes into account the number of COVID hospitalizations and ignores other metrics. Their agenda is to create the impression that, if you are vaccinated, there is no reason to take most other mitigation methods unless you are in a “special” risk category. They hid, and continue to hide, the real data in a section called COVID-19 Community Transmission, geared specifically for “healthcare facilities [to] use to determine infection control interventions.” Sure, the data is publicly available, but like any good magician, it’s all about misdirection. Hiding the data like this is a huge slap in the face. “This is how much COVID spread we want you to care about,” the CDC seems to say as they point to Community Levels. They now refuse to acknowledge Community Transmission data, which is how much COVID is actually spreading.

This is when I became furious. We put Biden in office to fix this. He started to. And don’t get me wrong, he did some good. But when the public stopped caring, his administration did too. As I wrote in a previous piece, “I (and many, many other disabled people) have always been skeptical of the CDC from even before the COVID pandemic hit. Then, it hit, and the lack of transparency under two administrations is something very few of us expected.” And I stick by that. We should not have to fight for our lives every single day to prove to the government that we are worthy of living. Yet, here we are. And, for that, I am furious.

I am furious because, while discussing a study about COVID risk factors in an interview with Good Morning America, the CDC Director (Rochelle Walensky) said the deaths of my friends, my disabled comrades, are “encouraging” because “these are people who were unwell to begin with.” Now, I will acknowledge that the first, widely-shared cut of the interview had Walensky’s words taken out of context due to a misleading edit. However, even in the extended version rereleased by ABC, Walensky still dismissed the lives of disabled people who were “unwell to begin with.” As a result of the backlash from these comments, Walensky met with disability rights leaders (a video of which can be found here, or the American Association of People with Disabilities readout here) to apologize and “listen” to the concerns of the community in order to “learn how CDC [sic] can do better.” All I’ve seen as a result of that meeting are empty words from the CDC and the continual perpetuation of harm. So, I’m furious.

I am furious because, as I was working through the edits to this piece, Biden said “the pandemic is over” in a 60 Minutes interview. His administration has let it all go to shit now, and they’re not even hiding it. All the data (like the average of 5,000+ new cases and 500+ deaths per day as of September 19) suggests the pandemic is still ongoing, but they simply don’t care anymore. I repeat: we put Biden in office to fix this. And right now, he is failing. And that is infuriating.

I am furious because of the “sunshine and rainbows if you’re vaccinated” approach. I am furious because of the constant dismissal and denialism of COVID as a real issue. I am furious because of the blatant disregard for human life by multiple administrations. I am furious at and distrustful of federal public health agencies for their complicity in allowing COVID to fester uncontrolled. I am furious, and I have every right to be.

There has got to be a better way to handle this. And I will not stop fighting until the government, and public health in general, gets their shit together and treats COVID like the real, threatening, deadly virus that it is.


Personal Grievances

As the government has continued in its abject policy failure, I have developed deep, personal grievances with extended family members, with my friends, and even with random strangers. I can’t help but feel like they just… don’t care, and that they won’t care if I die because of COVID. And that makes me furious. I am a human being, with as much of a right to life as anyone else. I deserve to be treated as such.

I am furious with every person I see walking maskless; with every single person who has decided wearing a piece of fabric or cloth is too much of a “burden” for them as they enter the store, or as they go to their friend’s birthday party. God, I wish I could go to a birthday party. But that’s a luxury currently only afforded to people who don’t face as much risk as I do. The least someone can do, the absolute bare minimum, is to wear a mask when they go out. But, if I ask for them to put one on, I supposedly infringe on their “personal freedom” to choose to wear a mask or not. Well, guess what? I don’t have the luxury of personal freedom to not wear a mask when I go out, because coming into contact with a maskless person who has COVID and catching it will fucking kill me. Again I repeat: I am a human being, with as much of a right to life as anyone else. Put the damn mask on.

I am furious with every single voluntarily unvaccinated person in the country. I make that distinction purposefully, as some people are medically unable to be vaccinated or don’t have access to the vaccines. I also did not call them anti-vaccine or “anti-vaxxers,” instead using the term “voluntarily unvaccinated.” As Philosophy Tube’s Abigail Thorn explained in her video on vaccines, voluntarily unvaccinated people are not typically concerned about vaccines (and may additionally support other preventative measures), but they are worried about the COVID vaccine in particular. Voluntarily unvaccinated people’s claims about the vaccine not being safe or effective are false and easily disprovable by taking a deep dive into the data. And that’s part of what makes me furious. Even worse than choosing not to protect themselves or others (such as disabled and immunocompromised people like me), they may also be unintentionally spreading misinformation about the COVID vaccines to dissuade others from getting them. Here are the facts: the vaccines are safe, they are effective, and they provide some protection from severe disease and death. There is no logical reason (other than medical exemption or lack of access) to not be vaccinated by this point, and frankly, it is enraging that people still refuse to get vaccinated. Moreover, it is terrifying.


Conclusion

These types of pieces are supposed to have neat, tidy endings. When I started writing this on August 22, I expected to cleanly finish it in one night.

But this sorrow—this grief—is excruciatingly unending. I can’t wrap things up and tie everything together with a pretty little bow because these feelings are ongoing. My fury with the world, with every single person who works in government blatantly enabling our deaths, with every single person who refuses to wear a mask, and with every single person who is willfully unvaccinated, is ongoing. My petrifying fear of dying of COVID is ongoing. The people who should care, don’t. And for all these reasons, I am furious, petrified, and stuck in a perpetual state of grief.

The words here, on this page, at this moment, have to end. But this experience won’t end. Not after I finish writing it, not after you finish reading it. So, I can’t give you closure, nor satisfaction. I can only give solidarity. To those who are hurting, grieving, and as scared as I am: I am with you.

And to those who call for an ending to my rage, to those who call for me to “move on,” I can only say: The ending you call for won’t be satisfactory. It won’t be pretty. And it won’t be.


Acknowledgments and Support Links

Huge thanks to my partner EconEnby for giving me narrative and editorial assistance, and also for being the best partner in the world. And thanks to Dr. Alexis Mobley for helping with a couple general science questions.

If you liked this article, I would appreciate it if you would consider sharing it or sending me a tip (completely voluntary!) with Ko-fi, Venmo, CashApp, or Paypal. All of that information can be found here if you want it. As always, if you need a listener or extra support, feel free to shoot me an email at derek@derekschmitz.com or DM me on Twitter. Thank you so much for reading!

1 thought on “I’m an Immunocompromised Teen. And I am Angry.”

Comments are closed.